Posts: 7

Topic: We're about out of options

Hi All,I haven't posted in quite sometime. However, I have been reading many of the other posts. John and I just got off the phone with the doctor and it wasn't good news. John had a ct scan last Wednesday. He has intrahepatic cc with metastases to both lungs, a large mass on his pancreas, abdominal lymph nodes, peritineal wall, and L2 vertebrae. The doctor said the scan results show at least a 20% increase in all cancer sites and more in the liver and pancreas. The doctor said he is out of options for treatment. John has been jaundice for 3 months now. They put in a bile drain but nothing much is comming out. His liver is just not functioning. In the past he has had radiation, gemzar & oxoliplatin cocktail (he started to have reactions to oxoliplatin), erbitux(bad reaction),panitmummab was the last round of treatments. Before any of these treatments he tried a clinical trial with soranifib with disastrous results(he almost dies 3 times in two weeks in intensive care). I've been looking at other trials but his bili last week was 17.6 and rising so no trials either. The doctor relunctantly sugested a combo of gemzar & cistiplatin as a means of keeping the tumors from growing any more but he didn't sound too hopeful. Has anyone had this combo and if so what were the results? Is it just me or does a phone call instead of a face to face appointment seem like the chickens way out of dropping the bad news?I'm sorry about rattling on but right now we both feel like we've been hit by a brick wall. Its very depressing. It helps to put things into words.

Re: We're about out of options

Alice and John .... Gemcitibine and cisplatin is considered first-line treatment for metastic cancer. I have tried this combination. I believe it was my second regimen tried. It did not help me and I had more emergency room visits with this treatment than any of the others. It's an individual choice but I would certainly take in to consideration John's present condition. I personally would say enough is enough. I'm a firm believer in hope and prayer but I'm a realist at the same time. It's like the regimen I'm on now. I will try one more round, now that I have seen the accumilative results and have a scan and if nothing stop chemo for quite some time. I may not even do another round as to much is going on with my length of recovery. I am really sorry that all those regimens and trials did nothing but cause misery. A phone call surely is not the way to say sorry I have nothing else that will help. If I was to do anything at this time I would boost my immune system with B-6 and B-12 and filgrastim. stay away from procrit if possible,from what I have researched it is a pretty high risk drug for complications. Again, I'm so sorry to see things going this way. I wish I had a magic wand and could heal with it's touch. My heart aches for you both. If his liver is having difficultly now putting more toxins through it would harm it more, where as rebuilding immune system may buy a little more time. You guys certainly have reason to feel depressed. You have really fought this beast head on. It once again it falls back to individual choice. No I'm not going to be the chicken, either choice is not good and personally more chemo is the worst of the two at this stage. Lots of support and prayers coming your way. God Bless You Both,Jeff G.P.S. John your one tough and brave Man but we all have our limits. The human body sometimes just won't keep up with our determination and mind set. You know what I mean I'm sure. (If you want to take it to the limit one more time) , It's a tough choice you have to make. John I e-mailed you directly with the current regimen I'm doing if you for some reason want to try and I guess your Onco would have to support it as well. Sorry for being so blunt but I'm angry for you and hate seeing what you have had to endure.

Re: We're about out of options

Jeff,

I think you are the most caring person I've run across in way too many years. I've read many posts and you are always there with kind words and sound advice. And all this while chasing your own cc deamon. John is determined to do anything and everything possible to live as long as he can. The idea of dying doesn't bother him as much as leaving our two granddaughters and missing out on their growing up. Even though I understand his decission may not be the best I can't bring myself to discourage his hope in any way. Could you please give me some idea of what to look for in the way of side effects so I can try to be on top of any problems as they arise? We've been together 33 years come the 10th of July. I don't know how to live without him.

Re: We're about out of options

Alice,My heart is breaking for you both. My husband John has had the same news from his oncologist two days ago.I know how you are feeling right now, you want to do anything to keep him with you. I felt the same way until today.I was looking at John and could see him failing before my very eyes. I don't want to have him die this way. Your husbands body is telling him it's time. I know he's afraid but I believe, God will be there waiting for our husbands and don't worry he may not be there in person but God will make sure he sees his Grandkids grow up.

I too don't know how I can live without my husband. I'll pray for you this evening. Just hold him and comfort him as much as you can. Let him know you are there and how much you love him and you'll never leave him.

Re: We're about out of options

For both Alice and Charlene, I have followed both of your posts, and am feeling so sad for both of you. I hope you can find comfort in shared feelings, and in knowing that we are all here for you. We are praying for you and your husbands.

Re: We're about out of options

Alicat859... As soon as I get back home to my computer I'll surely give you some more information of whaty I have experienced, But you have to remember it is different for everyone; but is some common things that can be done to help. God Bless You Both!Jeff G

Re: We're about out of options

Alice and John, my heart is with you. Peter and I are also married 33 years and now his lungs are starting to be infected I doubt there will come much more time. Peter says he will fight till he can't no more and he is not afraid to die. My heart breaks that he will never see his possible grandchildren. Our 2 sons are adults, but there is no wedding yet in the near future.I try to hold on to the fact that we at least had those 33 beautiful years and the boys that we are so proud of and happy with. But I can fully understand you wanting to go on with John, as I would with my loved one.My prayers are with you both,Iris.

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